Hi SoccerGirl: Am so sorry that you've been put through the ringer on all this. Weren't they talking about ONSF at one point with you? What happened with that? Am glad that you've finally convinced them to let you try Diamox -- I hope it helps and that you have no reactions to it. What a lot of pushing you've had to do!

Do you know what CSF labs they ran? Glucose, Protein, etc? How much Diamox and Topamax are you taking now? Can you get copies of the CSF labs to see what #s they're talking about in addition to your pressures?

Shunts. I guess I should always say this: I'm pretty biased about them. BUT, I don't have papilledema so mine's a very different scenario regarding shunts. To start to answer your question, the answer primarily is "no, there's not a temporary shunt". There are diagnostic procedures that mimic a shunt for a couple of days (a 2-3 day lumbar drain), but those merely exist to pre-test for shunt compatibility. Not a treatment, but another blasted test/lab. Once a shunt is placed, it typically stays placed unless there's a raging infection, or your body rejects it entirely. Sometimes, they'll switch a patient from a VP shunt to a Lumbar shunt or visa versa. Where I come from, if a shunt ultimately is deem inappropriate, they just tie them off and leave them in.

I am now on VP shunt #3 (they've all failed) and it's been ligated/tied off for nearly 2 years (It took me 13+ months to finally convince a neurosurgeon to do so), so my shunt is not patent. But saying that there are still shunt implications for me and likely I will always have the shunt artifact & its catheters in place. I think there are some on this board who've had shunts removed; and I know there are some who have Lumbar Shunts and can speak to their efficacy and performance.

Have your docs suggested any other testing? Are you seeing a neuro-ophth?

Sure hoping they work this out for you NOW. Stay strong and know that all good wishes being sent your way.

I'm so relieved your doc finally put you on Diamox! People who have sulfa allergies generally don't react to Diamox. It has a completely different molecular structure. My response to sulfa is anaphylaxis, and I'm okay on Diamox. I think everything possible should be tried before resorting to a shunt.

If ONSF is the eye surgery my eye doctor said he would not perform the surgery. So my neuro doc is going to send me to another eye specialist to see if they will do the surgery. But I'm day two of diamox and I feel like I am walking in a space suit floating.. Lol. I'm at work to and I'm in a daze and so sleepy an my feet and hands are tingling and I can't really feel my body if this makes sense at all.

Soccergirl,

It makes perfect sense. One of the side effects of Diamox can be a spacey feeling, including confusion, feeling a little removed, sleepiness, etc. The pins and needles can be pretty intense at first. It all usually gets better over time as your body gets used to the drug.

A sudden decrease in csf pressure can also make a person feel like they are floating. During one of my LPs they took me down to a 7, and I felt GREAT! My head felt so light and normal and I felt like I was floating, not like the usual bowling ball of a head on my shoulders. I think that's where I learned where my "normal" is. Anyway, It usually takes a month or two for a new Diamox dosage to make a difference in csf pressure for me, but everyone is different! You could be feeling that change.

Sea, that's a relief to know. And my symptoms seem to be getting better.


Pressure, I take 500mg of diamox a day, 250 of topamax a day, 750 of keppra a day.

Yay, you finally got diamox! Hope it will be just what you needed. My side effects have calmed down with time.

I can't think what CSF lab would make them think about shunts aside from OP. But that's good your neuro seems to be on top of it. As others have said, no luck on a shunt being temporary, at least not by design.

I hope the diamox does the trick so you won't even need to decide about a shunt. Good luck!

Not sure what I should be thinking right now. A little confused. I called my doctors office and left a message that I had a horrible headache with no relief from the meds, very stiff neck, and extreme lower back pain, slight nausea, blurred vision that comes and goes and a lot of pain behind my eyes. My doctor said he was worried about my dosage of diamox of 500 and to lower it back down to 250.

Why???

........... ......... I'm allergic to diamox. It's official, rash, sweats, and high temp.

That's too bad. You're the one in a million. Dirty rotten luck. That's one less tool your dr's have in their toolkit. I'm really sorry for your situation - Diamox is such an easy answer.

I'd encourage anyone who isn't on Diamox and is allergic to Sulfa Antibiotics to not be afraid of trying Diamox. There's a warning in the package insert, but the vast majority of people don't have an allergy to a non-antibiotic sulfonamide even if they are allergic to an antibiotic. If your doctor wants you to, try Diamox on a small dose (100mg/day), then increase slowly. Increasing too fast can provoke adverse reactions that you're not willing to tolerate.

In the following article, you have to really dig in. It doesn't really say what it seems to at first. The fourth paragraph says why someone whose sulfa-allergic is not likely to react to a NON-ANTIBIOTIC sulfonamide drug.
http://www.ncbi.nlm.nih.gov/pubmed/15234289

Quote: "Although a sulfa allergy is reported to be a relative contraindication to acetazolamide use, there is little clinical or pharmacologic basis for this recommendation. A true cross-reaction between sulfonamide antimicrobials and the sulfa moiety in acetazolamide and furosemide is unlikely"
http://www.uptodate.com/contents/idiopathic-intracranial-hypertension-pseudotumor-cerebri-prognosis-and-treatment



Quote:
"We reviewed 363 charts. Of these, 329 patients (91%) were excluded. Of the remaining 34 cases that did report a so-called sulfa allergy, 13 (38%) received acetazolamide alone, 7 (21%) received furosemide alone, and 14(41%) received both acetazolamide and furosemide. Of the 27 patients who received acetazolamide, 10 (37%) had no documented allergic cross-reaction to sulfa, and 2 (7%) cases had urticaria. The remaining 15 (56%) of acetazolamide-treated patients experienced predictable adverse reactions for this drug (for example, paresthesias). No patient experienced a severe allergic cross-reaction to sulfa. "
http://www.uptodate.com/contents/idiopathic-intracranial-hypertension-pseudotumor-cerebri-prognosis-and-treatment/abstract/38?utdPopup=true

There are a bunch more.

Well, that really does suck eggs, soccergirl. :(

Sea, it stinks completely. And someone earlier asked what my doc had said my lad was that concerned them to put me on diamox. I believe when I spoke to my doc today it was my icp- it was like 58 or 60. So they wanted to try diamox.

Thank you Sea for the info too on diamox. Very informative :)

I am so sorry Soccergirl - lots of support and hope that you can find a way to sort this all out!

Oh no! Can't believe you are actually allergic. After all that. I'm sorry.

ICP = intracranial pressure. In an LP the measurement that infers the ICP is the OP - so perhaps that was actually 60 this time?! That would make the most sense with your neuro's reaction, too.

I hope they get your pressure down effectively soon, and that you recover quickly from your reaction. Feel better. If I had a magic wand I would definitely be waving it in your direction right now. Take care.